Hey there everyone!!!
Let me begin by saying that way back when (this last fall) when I finally took my health into my own hands and got ready to see a neurologist, this site in particular gave me the emotional and mental strength to know that I wasn't just "making up" all my "twitches" and "eye-rolls" and "space-outs" and seeing the courage that others had gave me the courage I needed to make that first appointment. Thank you all from the very bottom of my epileptic heart!!!
That said, today is truly the first day I feel okay saying that I have epilepsy. As my doctors have told me repeatedly, and which I'm starting to own proudly, everything about my case seems to be atypical. I am a 31 year old woman who just got a working diagnosis of Juvenile Myoclonic Epilepsy. While I have dozens of myoclonic jerks and twitches a day (oops there goes another coffee mug, oops there I go down another flight of stairs) and about the same amount of absence seizures (I'm sorry what was that I was just saying....) I'm lucky (if you can call it that) in that my tonic clonic have only come five times while I've been awake though the injuries I wake up with indicate that they visit me in my sleep with alarming regularity.
While my symptoms are all more or less textbook and the progression seems to fit JME like a glove my brain decided to just chill out for the EEGs and while I may still have to do a long-term hospital stay for observation at some point I started medication last week, knowing that if the medication affected the symptoms then ladies and gentlemen we would have a winner. Now I hate putting anything not grown from the green earth in my body so for me to jump for joy, literally, once I had a prescription in hand, whatever my brain has been doing to my body has gotten me run just about into the ground completely. Long story short (to late, I know...) about a week after beginning the zonegran (100mg/day to start) I only counted FIVE, count them... FIVE twitches or jerks or whatever you want to call them all day long today and I know this is just the beginning of another long road but at least now I know what I'm up against and can do something about it, even if it's simply treating myself gently when I should.
It would take way too long to detail the long chain of events that lead to it taking 31 years to figure that all out but in brief I've been called everything from inattentive to clumsy to rude to overdramatic because of the fireworks in my brain over the years and I can't believe the relief of knowing that there is a reason and that it is not my fault.
Wow, I didn't mean to write all that as an "intro" but there ya go. I'm going to have to get my feet wet in here and look around now that I'm all registered and finally owning the actions of my own brain and body for what they are (and they've been pretty funny at times, there is a certain slapstick humor to banging your head against a wall while leaning against it after all.)
Be well all
-C-
Let me begin by saying that way back when (this last fall) when I finally took my health into my own hands and got ready to see a neurologist, this site in particular gave me the emotional and mental strength to know that I wasn't just "making up" all my "twitches" and "eye-rolls" and "space-outs" and seeing the courage that others had gave me the courage I needed to make that first appointment. Thank you all from the very bottom of my epileptic heart!!!
That said, today is truly the first day I feel okay saying that I have epilepsy. As my doctors have told me repeatedly, and which I'm starting to own proudly, everything about my case seems to be atypical. I am a 31 year old woman who just got a working diagnosis of Juvenile Myoclonic Epilepsy. While I have dozens of myoclonic jerks and twitches a day (oops there goes another coffee mug, oops there I go down another flight of stairs) and about the same amount of absence seizures (I'm sorry what was that I was just saying....) I'm lucky (if you can call it that) in that my tonic clonic have only come five times while I've been awake though the injuries I wake up with indicate that they visit me in my sleep with alarming regularity.
While my symptoms are all more or less textbook and the progression seems to fit JME like a glove my brain decided to just chill out for the EEGs and while I may still have to do a long-term hospital stay for observation at some point I started medication last week, knowing that if the medication affected the symptoms then ladies and gentlemen we would have a winner. Now I hate putting anything not grown from the green earth in my body so for me to jump for joy, literally, once I had a prescription in hand, whatever my brain has been doing to my body has gotten me run just about into the ground completely. Long story short (to late, I know...) about a week after beginning the zonegran (100mg/day to start) I only counted FIVE, count them... FIVE twitches or jerks or whatever you want to call them all day long today and I know this is just the beginning of another long road but at least now I know what I'm up against and can do something about it, even if it's simply treating myself gently when I should.
It would take way too long to detail the long chain of events that lead to it taking 31 years to figure that all out but in brief I've been called everything from inattentive to clumsy to rude to overdramatic because of the fireworks in my brain over the years and I can't believe the relief of knowing that there is a reason and that it is not my fault.
Wow, I didn't mean to write all that as an "intro" but there ya go. I'm going to have to get my feet wet in here and look around now that I'm all registered and finally owning the actions of my own brain and body for what they are (and they've been pretty funny at times, there is a certain slapstick humor to banging your head against a wall while leaning against it after all.)
Be well all
-C-
